1. Population Mapping

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We are mapping, registering and cataloging the different types of adrenal insufficiency and adrenal hyperplasia in our country, to take assistance and check the needs of each location. This is the first study of its kind in the country.

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2. Identification card

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We are prepared and sending the identification card to members, this is the most basic item in international protocols.

We took a private action, where our president Adriana Fadel went to celebrate her Silver Anniversary and asked the guests for donations to ABA (instead of gifts). With this we were able to make the identification cards and deliver them all over the national territory, to everyone who has the diagnosis of AI and CAH.

 

3. Continuing education for PS

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Unfortunately, ignorance in the medical environment is an aggravating factor for AI and CAH. Even with medical recommendation letters, many doctors refuse to do the indicated procedure. To increase knowledge and visibility about rare diseases, ABA developed material with important information for doctors and nurses who work in the Emergency Room to spread knowledge and save lives, these classes are in person with explanation and cases.

We aim to visit all the capitals of our country so that all of our patients have adequate support from professionals in any part of our country.

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4. Distance Learning Courses

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Course on EAD platform for health professionals, family members, universities on the different adrenal insufficiencies and ways to identify them.

 

5. Medication

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Work to disseminate the need to bring the appropriate medication to our country, so that they can have a dignified treatment and with less side effects. In addition to thinking about the environment, because with the import of medicine we end up polluting our oceans even more.

Support for patients with difficulty in buying medicines, intermediating when there is a need.

 

6. Disposal of medicines

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We have to think about what future we are going to leave to our children and grandchildren, a healthy environment, unfortunately there is no information and culture about the disposal of medication, we need to make the population aware of how to dispose correctly. With campaigns through social media and working within our support groups we will spread the ideals of correct disposal for a better and more sustainable world.

 

7. Awareness

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Awareness raising work for patients, families and health professionals is very important to avoid crises. Even because an Addisonian crisis can be fatal, it is important that these people know how to recognize the signs of their bodies.

For this, we carry out daily awareness work through the support group - ABA Family - and through our social networks and digital media.

We include monthly interviews, and on special dates with ABA researchers and supporters to bring more knowledge to all involved and family members.

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8. Beware of children with CAH

 

A. Primer for caregivers

Booklet for parents, family and school of children with Congenital Adrenal Hyperplasia, which will contain information to help caregivers of children with CAH, on how to help them in the face of a crisis as well as their daily care.

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B. Translation and Book Distribution: "How to live with CAH"

We translated the book from English to Portuguese, provided by the organization Cares, which teaches children to know and live with CAH.

 

9. Legal Advice

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Actions aimed at advising, defending and guaranteeing the rights of people with AI and CAH, as well as their families and everyone involved. In addition to a booklet with the rights of patients, which is being created together with associates, aiming to guide the rights of rare patients.

We deliver requests made by ABA members, including all illness-related needs, to our First Lady

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10. Campaign: “What do you see differently?”

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The psychological shock of patients with AI and CAH is very large, as they are invisible diseases and therefore they are bombarded with judgments from society and causes many to have family problems and consequently a decrease in self-esteem. We are working to regain this self-esteem and cause society to reflect on others' non-judgment. "Be kind to everyone, you don't know the battle they are facing."

 

11. Emotional Support

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We have psychologists, who help patients in times of doubt and difficulties in facing illnesses.

Visits to hospitalized and bedridden members for treatment guidance, and psychological.

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12. Partnership with International Organizations

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As the main objective to bring information and greater subsidies for all patients, ABA is seeking contact and partnership with the international associations that represent the carriers of AI and CAH. That way, we will always be up to date with news related to diseases. Today we already have a partnership with the Swedish and UK association.